Joe's Advocacy for PALS

Hi, my name is Joe Harris. Welcome to my site, I hope you find the information provided to be helpful. This first section will be dedicated to providing personal information about myself. I am 36 years old and first experienced symptoms of ALS in the fall of 1997. I am married and have a beautiful 7 year old daughter that provides me with an enormous amount of happiness. I worked as a physical therapist up until May of 2001. Currently, I am on medical disability, wheelchair bound, dependent on others for personal hygiene, dressing, eating, toileting, writing, etc. I have no strength in my upper and lower extremities. My breathing, speech, and swallowing (I use a feeding tube) are affected. March 2004 I underwent surgery for a tracheostomy. I use a ventilator. Deciding to pursue artificial ventilation was by far the toughest decision I’ve ever made. Unfortunately, many decide not to pursue ventilation because they don’t understand that ventilation is a viable option or personal and financial issues dictate their decision. My own experience with a tracheostomy was tough at first. It took me awhile to get use to the tracheostomy. I had to deal with air in my stomach and sinus problems as well as the surgery. The sinus and air problems have gotten much better. And after some adjustments of vent settings and going to a larger tracheostomy, I've finally adjusted to the change. I'm sleeping better than before the surgery and I no longer wake up with a headache. The major change in lifestyle is I no longer can be left alone. But other than that I'm doing better every day. My family is wonderfully supportive and I know I've made the right choice every time my daughter loves on me and tells me she loves me. If interested in reading about pals vent experiences go to http://tpals.org/ on the internet.

Despite my physical limitations, I have experienced a tremendous amount of hope in my future. That hope stems from current research efforts, family/friend support, and the availability of modern technology. In today’s world there is more of an opportunity for dependent persons to live productive and satisfying lives. I am not naive enough to think that my future will be all positive. I know that I will be faced with many difficult decisions and psychological/physical hardships. In order for me to find my way around life’s roadblocks and open up my world to opportunities, I will have to rely on supportive family and friends, religion, spend time with my beautiful daughter, participate in recreation, utilize the computer/internet, and challenge myself intellectually on a daily basis. Currently, I am one of the Program Managers for the Extra Hands for ALS Program in the Boise area. A job that is both fullfilling and time consuming. http://www.extrahands.org/index.asp The purpose of this website is to share my experiences and knowledge in order to lessen your physical and psychological burdens.

I have utilized the counseling services at my church. Other counseling services available for minimal out of pocket costs are provided to me through the SLC based MDA ALS clinic and my wife’s employee assistance program. I also depend heavily upon council from friends and family. Another aspect of mental health is being able to transform ones identity. Throughout my disease process I have undergone a transformation from a physically oriented individual to more cerebrally focused. I have mourned every physical loss by going through the stages of grief. In a way I had to reinvent myself. This process of transformation and reinvention continues to be difficult, but with help, I have little doubt that I will be secure with my knew identity. Some last words of advise regarding mental health is never give up, set future goals, hunger for opportunities to laugh, explore the world for ways to keep yourself productive, and seek out supportive friends, family, and strangers. Chat groups can be an effective support media.

All thought is prayer. In times of stress, may we keep our thoughts filled with positive intentions for the highest good of all concerned.(taken from the book Stressed is Desserts Spelled Backwards)

My goal for physical health focuses on avoiding contractures by stretching, maintaining a healthy immune system by getting flu and pneumonia vaccines (Contact your primary care physician to see if he/she has vaccine available or visit http://www.findaflushot.com/lungusa to find a vaccination site near you.), and avoiding fluctuations in my weight by eating a healthy diet. Currently, I recieve my nutrition via a feeding tube. I try to consume more than 64 ounces of water per day. I avoid alcohol, tobacco, and take only necessary prescribed meds.

It is false to assume your life is over because you have been diagnosed with ALS. I have participated in many recreational activities since my diagnosis. I have been fishing for steelhead in Northern Idaho and for Salmon in Alaska. I have been on many outdoor outings and traveled to the east coast twice. I have attended professional baseball, football, hockey, and basketball games. On a regular basis I go out to movies, dinner, and shows. My wife and I have been to Hawaii, Western Caribbean, and Vegas for vacation. At home I enjoy sports on television, playing with my daughter and exploring the internet. I included a list of internet sites that provide me with entertainment activities. There are sites for book readers, online shoppers, music lovers, star gazers, and many more. So join me and shed the barriers so that living a productive and entertaining life becomes a possibility.

God gave us humor so we could laugh at ourselves, and not take ourselves too seriously.(taken from the book Stressed is Desserts Spelled Backwards)

I use my computer daily for writing emails, entertainment, and exploring the internet. Because I can no longer type, I utilize a computer tracking devise called Quickglance (eye tracking device), and an onscreen keyboard. I continue to search for better ways to utilize modern technology. I search for the computer system that I will use in the future even when my physical condition worsens. Much of my technology research can be found in the section titled assistive technology.

An internship was set up through Albertson’s college to assist me in the creation of this website. More than assisting me in creating a web page I was also given a chance to do something productive. During this process my self esteem improved, I set future goals, and I challenged myself intellectually daily. I have also learned a great deal about ALS and associated issues. Thank you Jacqui, Keri, Ms. Jann Adams a psychology department professor, Albertson’s college, and Dave who was an integral part in this Website. Thanks Don Byrne for inspiring me to become healthier and fight. Thank you for all those in the community who assisted me (Kathy UCPI, people at LINC, Regina local MDA office, Sue at the Idaho Assistive Technology Project, Marlene Puckett Washington Group Foundation and Mike Fritz Idaho Power to name a few). Thank you Stephanie Eddy and the Idaho Statesman for the wonderful story written about me. Thank you Adam, Shane, & Tim at Digital Easy Chair for their financial and technical assistance. Thank you Mark D. Walters and Riddell Williams for your pro bono legal assistance. In addition, I want to thank my brother Mike, Mary O'Connell, and Kathy for their help with assistive technology. Thank you Jill and Mom for all of your support throughout the entire process. Most of all thank you Katie for inspiring me to fight and become a better and more productive person. I feel extremely lucky and blessed to have loving and supportive friends and family. My family and friends continue to be my greatest asset in the fight to live life to the fullest.

I recieved a personal achievement award from the MDA on May 17,2003 and again May 2008.

Currently (2008), see stories in Idaho Statesman about "health hero's" and a story in "Idaho Health" magazine. Over the years the Idaho Statesman newspaper has been kind enough to write my story and Extra Hands story, which brings about much needed awarenness to ALS. http://health.idahostatesman.com/2007/story.php?id=62 http://www.idahostatesman.com/ourtowns/story/273830.html

See my speech that I gave at the MDA ALS symposium on May 17, 2003.

Take a look at the ALSA's guide for "surviving with ALS" at http://www.alsa.org/resources/manuals.cfm

MDA\ALS newsletter Read an article written by Cheryl Carter New that asks the question; why isn't ALS treated like other neurological diseases?

See my speech that I gave at the Idaho MDA ALS symposium May 2004.

I have a 4 year old who asks a lot of questions about my disease. Questions that will undoubtedly continue and increase in frequency. Thus when I came across the following information, which broaches the subject kids and explaining ALS, I was extremely pleased. The following was taken from PALS’ postings on the online support group “Living with ALS” discussion board.

A Booklet for Young People
Amyotrophic Lateral Sclerosis Society of Canada
6 Adelaide St. East, Ste. 220
Toronto , Ontario M5C 1H6
Published April, 1998
Phone: (416) 362-0269
Fax: (416) 362-0414
Toll-free: 1-800-267-4ALS
E-mail: alssoc@inforamp.net This booklet was prepared especially for young people. It is to assist in understanding and dealing with the changes that you might be experiencing living with someone special who has ALS or knowing of someone with ALS.**

Lou Gehrig - The Luckiest Man
By: David A. Adler
Gulliver Books
Harcourt Brace & Company
525B St., San Diego, CA 92101
15 E. 26th St., New York, NY 10010
1-800-544-6678, option 7, press 1
Published 1997
$15.00
ISBN 0-15-200523-4
Order online at amazon.com

“Human beings are like tea bags. You don’t know your strength until you’re in hot water.”(taken from the book Stressed is Desserts Spelled Backwards)

(Well, some of mine)

The Society for Accessible Travel & Hospitality (SATH) is a non-profit educational organization that has actively represented travelers with disabilities since 1976.

accessible travel tips and information about accessibility and traveling in a wheelchair.